"NMS Long and Proband Trials; Neurology Dept."

I was diagnosed with Parkinson’s four years ago. In late November I attended the Norfolk and Norwich University Hospital department for my annual assessment.

First of all I went to the Medical School where I had volunteered to take part in a research project. I have taken part before without any problems but this time I felt I was treated with a complete lack of respect by the research assistant.

I was shown into what I think was a training ward already occupied by an elderly woman in a dressing gown (whom I did not notice at first). Her presence was not acknowledged and I was not asked if I minded her being there. The door to the ward was also not closed. I felt most uncomfortable answering personal questions in this situation and eventually complained.

I was told the woman was another Parkinson’s sufferer as if that made it all right. I was also told that a colleague had not turned up so the research assistant was looking after both of us. Both my wife and I put our views politely but forcefully and after this I was given privacy and an apology. However there was no explanation of the assumption that I would not mind a complete stranger listening to the intimate details of my life. I pointed out at the time that the situation was stressful and would skew the results of my assessment. However, the research assistant did not seem overly concerned.

To cap it all the research assistant then asked my wife if we had driven in, even though my wife had her wrist in a plaster cast. It was as if she could not see me as a human being at all, let alone a human being with a driving licence.

Next I went to the Neurology Dept. where the board said that three out of four doctors were running 35-45 minutes late. There was no apology and no explanation. When my wife asked a nurse she was told that there had been an accident in the car park earlier on which caused problems. A medical student had also been sitting in which meant that everything had to be explained and so took longer. I would have thought that this last circumstance could have been allowed for in advance.

When I eventually got to see my consultant he was running an hour late. I had never seen him before and his first words were to say that I should ask him to repeat anything I did not understand. I found his English was heavily accented. However if I had asked him to repeat himself I would have just been more embarrassed because I could not understand the repeats. My wife and I think that between us we understood about fifty percent of what he said.

It also seemed clear that the consultant was in a hurry to finish. When I said that I was having problems with pain he dismissed it as ‘old age’ and did not even ask where the pain was. (I am in my early 60s.) I normally see the doctor for about 15-20 minutes with everything being explained to me and plenty of time for discussion. This time I was out of the room in ten minutes flat (presumably because the doctor wanted his lunch).

Two weeks later I received a copy of the letter the consultant sent to my GP. It said that I had seen with a medical student present which was not the case. It also said that there had recently been a deterioration in my ability to hold a spoon and do up buttons which is not so. I did not discuss this with the consultant but I did discuss it with the research assistant who must have got hold of the wrong end of the stick. I do have problems in this area but there has been no recent deterioration. The consultant wrote that I was having problems with balance and unsteadiness too but he did not discuss this with me either (and I still go up ladders to cut the tall hedges in my garden). The letter referred to a physical examination but the consultant himself did not do this, although on previous visits I have always been examined by a doctor. Only the research assistant examined me. I have no idea whether she was qualified to do so.

I used to feel that I was lucky to live near the Norfolk and Norwich University Hospital because I was getting the best possible care. Now I am not so sure. What sort of a hospital is it that employs a consultant whose English is so difficult to understand? And how could a research assistant be so insensitive? I think too that if there are significant delays affecting patients then someone should explain and apologise. And why should my consultation with the doctor be cut short simply because I was near the end of the list and he was in a hurry? I only see a consultant once a year and I think I deserve better.

I appreciate that I am not obliged to take part in any research in future (and I certainly do not intend putting myself through that humiliation again). Is it possible that I could also be transferred to another consultant? I certainly have no faith in my current one.

Responses

We are very sorry that you had a difficult experience after volunteering to help us on a research project. We will pass on your feedback so that confidentiality can be maintained in future. In terms of the consultant, you may want to speak to our Patient Advice and Liaison Service about your options. Contact PALS on pals@nnuh.nhs.uk or telephone 01603 289036.